Drastic update

[Fozzes]

I’ve was diagnosed about a year ago as I had all the classic symptoms. I have gradually reduced my pred from 15 to 4 but with flare ups and steps back along the way. A rheumatologist has just told me he thinks it might not be pmr as my bloods do not show any indicators and that steroids should kill all pain. He says I’m to drop 1 mg per week from now and then have my bloods retaken after a week of no steroids. Much as I dearly want to get off them I am rather worried about 1. The pain (he says take normal pain killers but they didn’t touch the pain pre diagnosis) and 2. Going back to square 1 when the bloods are taken. He seems convinced that I may have something else “mechanical “ going on not pmr. Anyone else been in this particular boat? Thank you.

[SnazzyD]

Hello, a few questions to help clear the picture. Was there a dose at which you were comfortable? What pain do you get? Has your doc made any provision for adrenal monitoring? There is a big difference between 4mg and 1mg if your adrenals aren’t yet ready to make up the shortfall in Pred without much warning with 4-0mg in 4 weeks. What is the plan for diagnosis when you are off steroids apart from bloods?

[Fozzes in reply to SnazzyD]

Yes I have been mainly comfortable along the whole journey but with flare ups based on activity and tapering. The pain is dull aching in the arms and shoulders mainly but does affect legs, hips etc. Adrenal has not been mentioned and there is no plan when off steroids as it will depend on the blood results. Thank you

[SnazzyD in reply to Fozzes]

If you’ve over done activity or performed a new one and get pain that’s to be expected and isn’t a flare unless it is persistent and not temporary while the muscle heals. Pain shortly after a dose reduction which lasts a few days to a week is also ok and isn’t a flare as such. Other than that listen to DL and PMRPro.

[DorsetLady PMRGCAuk volunteer]

Oh dear, another Rheumy who doesn't “get” PMR.

Up to 20% of patients don’t necessarily have raised markers - were yours originally? Even if they were, during treatment they have a habit of lagging behind symptoms.

If you’re not on the correct level of steroids - which you obviously aren’t - too low, too fast a taper - then they won’t “kill all pain”. Did your initial dose work?

You have reduced too quickly - PMR lasts a lot longer than many Rheumies think - 5.9 years median length not 2!

Had you been able to taper sensibly then you wouldn’t be in this mess - but as you are, I guess you can only do as instructed. And no, if it is PMR, then painkillers won’t help.

Do as he instructs, but keep a diary so you can tell him exactly what pain you have.... and if you can, get a second opinion.

Let us know what happens please.

[PMRpro Ambassador]

Can you find another rheumy? He is talking rubbish: some people are never totally pain-free on pred, even the starting doses although they should achieve at least a 70% improvement in symptoms as a whole (where DO they get this idea from?) And if you are on enough pred to manage the inflammation - OF COURSE the markers are normal if you are taking enough pred to manage the inflammation, 1 in 5 of us have normal blood markers even without pred!

At 4mg the problem is not stopping the pred because it isn't PMR - you have to wait for adrenal function to return. Reducing at 1mg per week isn't going to be slow enough for that - and any sensible rheumy at this stage would say continue at 1mg per month which might be slow enough. 4mg is a very low dose, doing no damage. He's playing a rather risky game - putting you at risk of an adrenal crisis and a return of symptoms which may be difficult to get under control again. Why not just wait the other 4 months and do it safely?

[piglette]

I despair. Doesn’t the rheumie realise that if the pred is working its magic your blood markers should be normal. That is why we take steroids. Unfortunately steroids do not kill all pain for everyone, but should kill at least 70%. Does your rheumie think that all painkillers kill off all pain? Some of these people are positively dangerous and should go back to medical school and learn about steroids and PMR.

[Fozzes in reply to piglette]

Thank you piglette!

[Rokerman]

I’m not altogether surprised that you haven’t been pain-free - your taper has been pretty fast. To put it into perspective, I’ve gone from 20mg to 0.75mg in FOUR years...... (however, that has been pain-free, except when overdoing things!)

Blood markers were raised at the outset but lowered dramatically after the higher doses of Pred - that’s what it’s for. I’d stick at the dose you last felt ok at - for a while longer.

[ChinaWuntoo]

Hi

What about your GP? Conventional wisdom suggests that rheumatologists know more than GP's. But it ain't necessarily so, as some of us have discovered. From what you say, your rheumatologist seems to be talking rubbish. If you can see a younger GP, trained in UK (not in a country where PMR is far less common) you might strike lucky. Your GP can over-ride the rheumatologist simply because they are a GENERAL practitioner and have the complete picture of your individual case. On the other hand, because they are 'general' they may not be up to speed on PMR and may therefore be open to be educated by their patients.

Get yourself as clued-up as you can and go armed to your GP - remember that a main finding of PMR research is that the patient knows best and should be encouraged to be in control.

'Dead Slow Nearly Stop' is good advice when it comes to tapering.

Hope you get yourself sorted soon.

[Fozzes in reply to ChinaWuntoo]

Thank you, I am hopefully speaking to my GP tomorrow

[ChinaWuntoo in reply to Fozzes]

Hope you get some help. Do you have any idea whether he/she is knowledegable about PMR?

[Joydeck]

Since tapering from 15 to 4 mg pred in a year is so exceptionally fast, a PMR flare is far from surprising . Besides, your upper arm and shoulder pain are classic first symptoms of a rising PMR flare.

I am currently on 2.5 mg pred but at 7 mg and 3 mg, I could make no further tapering progress for months. Perhaps, for you the barrier is 5 mg.

If I'm right a further drop of 1 mg, as advocated by your rheumatologist, will cripple you in days – both shoulders and hips! If so, a jump back to 7 mg pred for a few days, followed by weeks on 5 mg, should set things right fairly quickly.